Thursday, 17 February 2011

Oxygen, wedding, R.I.P

Today has been such an exhaustion. Iv had complete highs and extreme lows. This morning I didn't feel awful, the night had been horrible, waking feeling myself gasping for breath and just feeling like i wasn't getting enough air in. I  just had no energy by the time it came to morning and my IV treatment means I have a very small window of time to sleep and then its interrupted with IVs, at least Stu does them for me alot of the time because he realises just how little energy I have now days and wants to reserve it for the nice things. I didn't have the energy to stand in a shower but had to make myself presentable to go and view a wedding venue. I slowly got my self ready and we set off, my lungs weren't great. We looked around the wedding venue and It was perfect i felt so happy and now I'm just getting more and more excited. Me and Stu shared a kiss out by the lake and that sealed it, it was our wedding venue and my smile was from ear to ear. But on the low note, i realised when walking around this relatively small venue and just in between when standing there, my lungs were struggling beyond belief and i really wasn't having a good time. It took me ages to recover from the small wondering around and standing. It really made me feel sad, it worried me as to what id be like on the actual a wedding day.

We then made our way home, I was in a bit of a state with my breathing, things only felt like they were getting worse, we had some lunch at a cafe and i couldn't eat because i felt like i couldn't breath and felt really ill. We then got home and Stu ordered me to bed, feed my paracetamol, tramadol, anti sickness, anti itching (because the tramadol makes me itch like mad) I sat there and i cried, not the loud crying, but the sort where you just let the tears drop down your face, Stu was so worried about me bless him and doted on me every second. For those who know nothing about my fiance, I just have to say he is amazing, he cares for me so much and iv never felt so loved my anyone as i do with him apart from my mum and nan. There are many who wouldn't do the things he does just to help me and for that I'm truly gratefully. Anyway he then went on to insist that i cancelled my lesson that evening as i was lying there still out of breath. I reluctantly agreed. I then text my mum letting her know how i was feeling, i only usually text her if I'm really feeling abit tearful and know talking out loud will make the situation more real, like now and i was just feeling awful. I said i felt so out of breath and I need oxygen, I need it at home. I can't cope without it. My mum then rung the CF nurse who then rung me and agreed that if i my symptoms were worse out of hosp and I was continuing to decline then she would arrange oxygen, I feel so relived to be getting this finally. Iv felt like iv needed it along time, but felt stupid to ask and when i have asked in the past they have always said i didn't need it even though they hadn't done a oximitry test in ages. I guess i feel like such a hypocondriact asking for it, even tho I'm not and i clearly do.

The team have also decided to change my IVs again as there just not doing anything and iv started getting temperatures again to. They did say about bringing me back in but i said i just couldn't, i couldn't do it yet, I want to be home, no that's wrong I need to be. I need to be with my family. If i carry on getting worse over the weekend iv been told not to let it get awful and to ring the ward as there is a cf doc on and they don't want me getting really ill again especially as having the home oxygen as it will make me feel better so make me not see my symptoms and not recognise when I'm getting ill er until I'm really bad again. There wasn't any indication of when i would finish the IVs which i don't mind staying on them as long as they actually start working.

So tomorrow I'm off to the hospital to get all these things sorted.

My worries another thing I'm really worried about and may have mentioned, is that I'm going to carry on getting ill er over a very short space of time and that no IVs are going to work and that I'm going to be stuck in hospital. I'm just so worried about this.

Some more sad news a fellow CFer has died, I didn't know Lauren but read her blog and always wondered how she was doing as she had been so ill and hadn't blogged in ages. She was only 19. She looks so young and she was 19 is no age. She hadn't had the chance she deserved and i hate CF so deeply for taking Lauren. So please just take a minute for Lauren and send her your prays and hope she is breathing easy in heaven. I'm not a deeply religious person, but i do believe in god in some form and know that Lauren is now out of pain and suffering.



  1. The wedding venue looks really beautiful xx

  2. Sarah said...

    I am with Elly, and regardless of how you feel it will be such a special day for you and Stu that nothing else will matter. Keep fighting First I know you can do it x

  3. Hey hun. I know how frustrated it is being on meds and you feel like they aren't working. I was in the hospital for two weeks and now I've been on home IV's for three weeks and I'm on THREE oral antibiotics and THREE IV antibiotics so my schedule is crazy, but I still prefer getting less sleep with the comforts of home than being stuck in the hospital. I'm running fevers also and my doctor said if they don't break by tomorrow she wants me back in there, but MENTALLY, i don't know if I can do it!

    Praying for you - to have the meds start doing their magic for you, so that your wedding day can be spectacular!